Does it seem like it this just keeps going on and on?!?! And that it’s just the same song and dance over and over?!? I get it…
“It was a fairly depressing month…great because no chemo from September 10 to November 30 BUT I have been an emotional wreck. I miss my life the way it was. I miss feeling like I have a purpose. I miss routine. I miss feeling good. I miss myself. I truly don’t know who I am anymore…it’s like being reborn in a weird way?”*
For Thanksgiving we usually go to Tulsa to be with family. But we just wanted to keep it small.I Plus, I just wasn’t in the right frame of mind to have a big shin dig. So our friends blessed us with a long weekend getaway to a cabin in Broken Bow. And it was fabulous. I was feeling good enough to get to go on walks in nature and to be with the kids.
“Thanksgiving was great. I really missed the big get together with the Tulsa crew BBUT we had just our little family plus the grandparents in Broken Bow and it was pretty perfect. I think it was just the get away we needed that week…before we had to start the chemo journey again.“*
I started physical therapy to try to regain some range of motion.
It was so painful with those expanders in! So I wanted to try to stay ahead of the game if at all possible. I would go twice a week for several months…part of the time spent on stretching while the other part would be spent working on my cording. Cording is just a simple term for ‘axillary web syndrome’ which is basically scar tissue that forms from the mastectomy. Mine was deep but not very visible which was good. My therapist would just get in my armpits and dig it out…thank GOD I didn’t have much feeling at the time, lol!!
I started Taxotere on November 30
12/10/2018 “I saw Dr. Pala beforehand and we were FINALLY given some relieving news. She took my case to a tumor board and got 5-7 other opinions. Bottom line was that they didn’t think I needed 6 months of Xeloda…just while I do radiation! I was SO glad to basically get 6 months back 🙂 The biggest thing is for me to get through the chemo so that I can get on hormone suppression and have my ovaries removed. Since my tumors were so hormone driven, she said that getting on the next medication is going to be almost more important than chemo.
Taxotere started that day and Kaleb was there with me which was really nice.
Taxotere didn’t knock me down as badly as Red Devil, just very different side effects. “Infusion was Friday and I was just a bit tired for a few days. But by Tuesday I had full blown BONE pain. It was so weird and awful. Plus mouth and tongue sores. Just not fun The pain lasted 2 solid days and then started getting better. My mouth sores have just recently gotten better but the taste of things is sure different.
Right now I have laryngitis so I can hardly talk…proably because it’s so dry this time of year PLUS the dryness that chemo causes, it’s just a double whammy. AND I have sores on my face. They’re like mini lesions?
I swear, there is just nothing pretty about this whole thing.
I don’t know that I’ve ever felt more unattractive than I do these days. It’s pretty hard and I can’t stand seeing myself when I catch a glimpse in the mirror.”*
12/13/2018 “Today the kids went to visit Santa and I didn’t get to go 🙁 And tomorrow Kallie turns double digits…I can’t even believe it! I’m sad I won’t get to be as active in her celebration as I ’d like to be. This cold has been hanging around for about a week now. Even lost my voice to where it was just a whisper.
Then a few days ago, I started getting these ugly gross sores on my face. They kept getting bigger and spreading. After being on an anti-fungal and no change they had me go into the office to see what was going on and to make sure my lungs were clear. They ran my labs and turns out that my numbers are the lowest they’ve ever been. So basically, my immune system is totally shot and my face broke out with a staph infection.
So I can’t be in public or around people until my numbers go back up.
Super frustrating! I ’m not only hideous to look at but I can’t even be an active part of my kids’ birthday which breaks my heart. Hopefully she will look back and remember how much I love her and that is the part she will hold close.”*
I remember that Friday Kallie getting an award at school.
I wasn’t supposed to be anywhere near germs but how was I supposed to miss her getting an award ON her birthday???? The onocology office said if I would wear a mask and stay in the hall way away from all the kids, I could go. So that’s what I did! I showed up late to make sure the halls were clear and I left early before they were all dismissed. But I was freaking THERE!!!!
See, it’s a tradition that I get Kallie from school early on her birthday and we go do our nails and spend time together. But since I wasn’t able to, a special friend of mine took her to get her nails done and get ice cream. Meant the world to me and I ’m pretty sure Kallie had more fun with her than she would have with me, lol!
The last month of 2018 was off and on.
Some weeks were good and others not so much. I would miss several holiday celebrations but make a couple. The best part of it was Christmas…I mean talk about seeing what’s really important in life. Celebrating with my family and feeling good that week was the best gift ever. It was one of the best Christmases I’ve ever had. I am still so grateful to have that time.
“I think this past year has just put SO much into perspective that it would have been next to impossible not to have a great Christmas!”*
*exerpts taken from my personal journal